Retirees Raymond and Janice White are some of the most wired patients in America, thanks to the iCare Primary Care pilot program launched six months ago by Phoenix-based Banner Health and Philips Healthcare.
Janice, 77, and Raymond, 83, moved to a Phoenix-area retirement community 10 years ago after Janice was diagnosed with a chronic lung condition. Since last June, Janice has sent data to Banner from an array of wireless home health
devices—a scale, pulse oximeter, breath flow monitor and blood pressure cuff—all via an Android-based tablet. “You just enter that you've taken care of everything every day and tell them how you feel,” she said.
Raymond, who is diabetic, monitors his blood pressure and blood sugar data and answers questions from his Banner providers about how he's feeling that day. “They monitor everything,” he said. “If your blood pressure or your blood sugar is off, or if Janice is really off on her weight, they call. They assign you a coach, also. We have a very nice lady. She's very concerned about us, and answers any questions.”
Janice said she's talked up the home-monitoring program with the ladies at her quilting club. “I recommended it to two of them.”
Experts say an explosive growth in the volume of patient-generated health data is inevitable, with patient demand being a key driver. According to Pew Foundation researchers, 21% of Americans already are tracking their health on some kind of an electronic device. A survey by the IMS Institute for Healthcare Informatics last year found there were more than 150 mobile apps on the market that could track or capture user-entered data.
Patient-generated data help providers improve efficiency and better control patients' chronic conditions.
In addition, government policies will drive the use of such data. The healthcare reform law is promoting new delivery and payment models such as accountable care organizations that will use home-based health monitoring to reduce hospital readmissions and improve wellness and outcomes measures. The federal Stage 2 meaningful-use
criteria for electronic health records
encourage the adoption of personal health records and Web-based portals for patient-reported data. Early work on Stage 3 criteria indicates the government may require participating healthcare providers to collect patient-generated data by 2016. Patient-generated data likely will feed into big clinical data bases that will be used to guide the delivery of care.
A recent issue brief from HHS' Office of the National Coordinator for Health Information Technology defined patient-generated health data to include information on health history, symptoms, biometric data, treatment history, lifestyle choices and other information that is created, recorded, gathered or inferred by or from patients or their designees to help address a health concern. The ONC report identified data provenance—the origin of the data when they were first created—as a weak link in patient home data collection and transmission systems. The ability to accurately track provenance “is critical to provider trust in data received from patients,” according to the ONC.
Experts disagreed on how soon patient-generated health data will gain critical mass. Dr. Walter Sujansky, president of Sujansky & Associates, a San Mateo, Calif., IT consultancy, predicted it will happen within five years, particularly for weight, blood pressure and blood glucose. But Derek Kosiorek, a principal in the healthcare consulting group at the Medical Group Management Association, said the flood of data will hit within the next two years. “It's mind-boggling how fast this stuff is changing,” he said.
What is clear is that patients want to be empowered and physicians want to be in touch. “You're learning how to take care of yourself, and I like it,” said Apolonia Barrera of Hanover Park, Ill.
Barrera is diabetic. In between providing a monthly blood sample to the clinic, she takes her blood glucose readings at home every day on a battery- powered device, then types in and transmits a reading “only if it's high,” using her smartphone, iPad or personal computer. Through the portal, lab results from her clinic visits pop up in two days. “It tells you what is the normal range for a diabetic, so you can be monitoring yourself,” she said.
Patients can submit data from various wireless home monitors on Banner Health’s portal page.
“This is a revolutionary change to medicine,” said Barrera's physician, Dr. Jairo Mejia of the Access Community Health Network, a federally qualified community health center based in Chicago. “I've been in practice for 25 years and this is the first time we've had a close and real interaction with patients frequently. In some ways, it's like having a doctor not only in your house but in your pocket.”
At the beginning, like many physicians, Mejia was apprehensive about being deluged by patient electronic communications. It turned out that most patients were considerate of his time. He handles only about four patient messages a day. With his only overly chatty patient, he sat the man down and explained that “it's not a chat or a blog or Facebook; we're only communicating what's needed.”
Mejia said he's observed clear clinical benefits. “I've seen patients with chronic conditions gaining more control,” he said. “In the past, we had to wait three or four months for an interaction. With this system, I can do adjustments within those three or four months.”
Access launched its patient portal in 2011 and the mobile app last August. Data collection through the portal is based on the patient's individual care plan. All data transmission tools must integrate with the clinic's electronic health-record system from Epic Systems Corp.
Julie Bonello, chief information officer for Access, said, “When it's integrated with the EHR, we can determine the correct communication workflows within the record should abnormal results appear. It may go to a queue for nurse triage or it may go to a primary-care provider's work basket. But it makes sure we follow up.”
Bonello said that staff and patients need training in how to use the patient-generated data system to optimize care, but that electronic communications aren't for all patients. “Some patients will do great with these tools right away and others won't, and that's potentially fine.”
At Banner in Phoenix, 120 patients are in the pilot program for patient-generated data, said Dr. Hargobind Khurana, the program's medical director. Data from patients pour into Banner's NexGen Healthcare ambulatory EHRs.
Banner plans to have 500 patients enrolled by spring. Khurana said it's too early for either clinical or financial performance results from the pilot, but it's clear from anecdotal evidence that patients say this is their lifeline. “Now we're understanding the value of daily blood pressure management,” he said.
Dr. Brian Rosenfeld, chief medical officer at Philips Healthcare, said home monitoring is “the final frontier” in leveraging technology to improve healthcare productivity. “Right now, a home health nurse might be able to look at 30 or 40 patients, (but) we need that person to look at 300 to 400 patients.” He said Philips plans to sell its patient-generated data model to providers and health plans on a per- member, per-month basis.
Dr. Wayne Guerra, chief medical officer and cofounder of iTriage, a Denver-based developer of a mobile medical application that's part of Aetna's Healthagen division, said a big challenge is helping providers sort out salient data for each patient, and that requires effective algorithms based on a large clinical database. An example, he said, is for a diabetic patient's care manager to see only the patient's glucose readings when they are out of line. Guerra said it's key to make the system easy for busy providers. “They just need to say, 'Set them up with home congestive heart failure monitoring,' and then it's done.”
Applying big data analytics
is essential for triaging the patient-generated data stream, identifying what's clinically important and routing it to the appropriate provider, said Dr. Jason Mitchell, director of the Center for Health Information Technology at the American Academy of Family Physicians. “We hope EHRs are going to help,” Mitchell said.
Carl Dvorak, president of Epic, said EHR systems will indeed perform triage. “We can use our standard decision-support engine to separate it,” he said.
The Veterans Health Administration has been a pioneer in electronic health monitoring at home. In 2003, it launched a systemwide program using an Internet-linked Health Buddy data communications device connected to the VA's VistA EHR, said Dr. Adam Darkins, the VA's chief consultant for telehealth services.
In fiscal 2013, more than 144,000 high-risk veterans were monitored for chronic conditions including diabetes, high blood pressure, chronic obstructive pulmonary disease, depression, post-traumatic stress disorder, weight management, substance-abuse disorder and spinal cord injuries.
Creating a patient-generated data program
According to Julie Bonello, CIO at Access Community Health Network:
- Base data collection on what's needed for a patient's individual care plan
- Integrate patient data transmission tools with the EHR system to ensure efficiency and proper follow-up
- Optimize tools and patient records to clinical guidelines
- Use data analytics to identify what's clinically important and route it to the appropriate provider
- Define standard protocols and train clinicians how to use them
- Understand that not all patients are able or willing to use electronic communications
In 2008, Darkins published a study of 17,000 of the VA's early home-monitoring program participants. It showed a 25% reduction for them in hospital bed days and a 19% reduction in admissions, with an 86% mean patient-satisfaction score. Today the program operates with a ratio of one care coordinator, typically a nurse or social worker, for 150 monitored veterans.
Darkins attributed the effectiveness of the VA program to the strong tie-in to a robust EHR system; algorithms to help identify patients who are faltering; messaging and rapid response to those alerts; consistent implementation of the programs at VA centers across the country; and economies of scale from operating a large healthcare system.
Maribel Molina, another patient of Mejia's at Access, testified to the benefits of home monitoring. She and her husband, both diabetics, run a metal refinishing business from their home in Glendale Heights, Ill. Given how busy they are, they prefer sending messages to Mejia about their blood glucose readings via their desktop computer or mobile devices. They try not to go over 6.3 in their sugar levels.
“We are very busy, and sometimes with a (doctor's) appointment, you have to wait 45 minutes,” she said. By messaging her doctor with their readings, they don't have to take the time to go to the doctor's office and interrupt their work. When they have to speak with Mejia, they contact him through the clinic's Web-based portal and get a quick response. “If I think of something in the middle of the night, I can send him a message and he'll answer in the morning,” she said.
The regular reporting of their blood sugar levels has helped. “I just look at the numbers and I can compare every three months,” she said. “I can see my ups and downs, and it's helping me maintain my sugar. It's a great tool if you have diabetes.”Follow Joseph Conn on Twitter: @MHJConn